Monthly Archives: March 2014

Purpose. Meaning. I think it’s the great mystery in life. When you grow up in church, and you’re in youth group and stuff, they always talking about “Finding God’s Purpose For Your Life” (aka “calling”). Some people are all like “Yeah I’m gonna be a missionary! Or I’m gonna be the godliest Egyptologist ever!” Me? No clue. In fact, the only thing I knew I wanted out of life was to be a parent. I think I’ve pretty much got that going for me…but now what? I’ve got a job and I’m happy where that’s going. But I think purpose is something different altogether. To me it’s that thing…not necessarily your job…just the thing that drives you. The thing that keeps the gears turning in your head.

A couple years ago I read a book called “A Million Miles in a Thousand Years: How I Learned to Live a Better Story” by Donald Miller. It talked about how life is a story, with characters (you and the people you meet), a plot (your life), conflict (all your problems), etc. Miller talks about how you can live a better story by making it one that others would love to read. He gives an example that no one wants to see a movie about a dude whose biggest goal in life is to own a Volvo…no one will cheer when he eventually buys it. This book made me think a lot about the power of people, words, stories, influences, and experiences. After reading the book I signed up for an email list from Donald Miller and I got a really great one the other day. Here is pretty much everything in that email:

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Years ago a psychologist named Viktor Frankl stood up to Sigmund Freud. Freud was teaching what man wanted most in life was pleasure. But Frankl believed man wasn’t seeking pleasure as much as he was seeking a deep sense of meaning. In fact, he went on to say:

I believe Frankl was right, and I think it’s obvious. Everybody around us is seeking pleasure, but pleasure rarely satisfies. In fact, the most contented people I know have found something more satisfying than pleasure, they’ve found a humble sense of gratitude and are actively participating in work that is difficult, beautiful and good.

Viktor Frankl spent most of his life studying the mystery of meaning, and amazingly, he came up with a prescription for how we can experience it ourselves.

His prescription was remarkably simple:

1. Have a project you’re working on that requires your unique skills and abilities. And preferably a project that helps others.

This email really got me thinking about purpose and meaning as it relates to my life. A lot of times we mistakenly look for purpose in work. Or they try to find it in pleasure and hobbies. Nothing’s wrong with hobbies and work, but I’m starting to see my purpose as different than that. I’m starting to think that my purpose springs from being a dad: advocating for my son AND other heart kids out there, while using my experiences to help others who are going through the same thing. You see, I started this blog after a night where I couldn’t sleep well because I was bothered by the thought that there wasn’t much out there for heart dads. So after debating with myself, I started this blog and I’m glad I did. I’ve been able to interact with lots of people through the comments section: people who have been helped and that makes me happy. If you give support you get support in return and that’s the name of the game. That’s what it’s all about for me. I want to be part of the conversation of helping heart kids get great care, helping them in school, helping them with feeds, helping them with resources. So that no one facing this frightening journey has to feel like they’re alone or receiving lackluster care. It gives me purpose, because it’s not about me anymore.

I think if Nolan was born perfectly healthy, that would be nice, I’m not gonna lie. But there are days where I thank God for opening my eyes. This road has helped me be more compassionate, more kind, more helpful…and there’s still so much to learn on the way. Nolan will continue to face a lot of challenges along the way…but I’ve got his back…the same for all my kids. It’s my job to fight for him until he’s old enough to fight right alongside me. Life has new meaning when you make it about others. Booker T. Washington once said, “If you want to life yourself up, lift up someone else,” and I believe that to be 100% true.

One of the most frustrating parts of having a heart baby is that nothing is just easy. I’m not talking about the big stuff, like surgeries, caths, and whatnot. I’m talking about the “simple” stuff. You know what I’m talking about: colds, ear infections, in-office procedures. That kinda stuff. For a healthy child these are a peace of cake…for a heart child?

Want an example? You got it. During the last couple weeks in February, Nolan was actin’ a fool…just a complete angry cuss. We decided to take him to the pediatrician and yep, ear infection. Get antibiotics prescribed, 10 days, gone, right? Nope. The last week in February, Nolan was like a raging elephant with IBS. He was inconsolable. He was running a fever and showing low oxygen sats while I was in the Parents Symposium, and the cardiologist on call wanted him to be brought in to the Children’s ER just to be on the safe side since it was a Saturday. So Bekah found someone to watch Grant and Hudson and I met her at Levine. Of course, Nolan STILL had an ear infection and a bit of a fever. Aaaaaand they were going to have to admit him…not because of the ear infection, no no no, but because of the low sats. See, they think the fever caused the drop in sats and he’d have to go on oxygen til the sats went back up. Awesome. All over an ear infection. Get my point?

So he was there a couple days, got several doses of STRONG antibiotics and his ears still looked like crap. So they scheduled an appointment with an ENT Doctor, who recommended tubes be put in Nolan’s ears. Here we go again.

Now NORMALLY, tubes could be put in right there in the office, bada-bing bada-boom, 15 minutes. Not for Nolan. You see, heart babies need (and SHOULD) utilize a special pediatric cardiology anesthesiologist whenever they have any procedure done. They know all about their special hearts and what to look out for. That’s good. Unfortunately, it means it can’t be a 15-minute, in-office kinda deal. Sooooo we had to have the ENT schedule with the anesthesia team and schedule an operating room at Levine Children’s Hospital. Then we had to show up at 1pm for a procedure scheduled to begin at 3pm. It actually didn’t begin til close to 4 because the operating room wasn’t available on time. By the time they got Nolan to sleep and the anesthesia team was putting in an IV, the ENT was already done with the tubes. Start to finish, it took about 20 minutes. And the hospital is a good 35 minute drive. Sigh.

I know, we all wish life could be simpler…and it’s these “little” things that really take a ton of time with a heart baby. But as much as I’m always in a rush, it’s good to know they want to do it the RIGHT way. And sometimes you have to keep tabs on those kinds of things. GOD forbid something happens during a “simple” procedure and Nolan isn’t at Levine Children’s. Sure, it’s inconvenient for a simple thing to turn into several hours or even several days…but at least that puts him at easy access to his heart team. And for that, I’m grateful. But look out, heart parents, there is no such thing as “simple”!

When I went to the Camp Luck Annual Symposium, one of the coolest sessions they had was the Heart Sibling Panel. I was particularly interested in this since, well, Nolan has 2 other brothers…not to mention I wanted to get a glimpse into how siblings feel through the heart journey.

I gotta say, I was impressed. No, I was blown away by these kids. First of all, it takes a lot to get in front of a room of people and talk about anything. I’m pretty comfortable with public speaking, but it’s not for everyone, and sometimes it takes a lot of courage. Not only that, they had to open up and talk about what it was like to be a heart sibling. To be honest, I expected them to talk about how they’re sometimes jealous of the attention the other sibling gets or how they are scared of their sibling’s CHD. Boy was I wrong. They opened up about how much they treat their sibling like a normal kid, how much they look out for their sibling, and how much they really, truly love their sibling. It was touching, it was emotional, and you could tell the kids meant it.

I went away from that hoping against hope that Nolan’s brothers – Grant and Hudson – would become just as well-adjusted, polite, and caring as the kids on the Sibling Panel. Seriously. I mean I expect my house to be full of 3 boys destroying everything, farting, and arguing with each other…but at the end of the day, I want them to take care of one another. I want them to play nice, to include each other in things, and look out.

I think Hudson is going to make a great big brother and I think Grant will always look out for his twin (that is, when he stops trying to take his toys all the time). The next several years will be mighty interesting, as we have to teach Nolan about his CHD but also Grant and Hudson as well. Hudson knows Nolan has a special heart, but eventually I want him to understand it too. It’s going to be interesting to juggle all their individual needs and school and activities and church, etc. Whew. In the meantime, though, I just love it when they place nice:

So tell me, fellow heart parents: if your heart baby has siblings, how do they handle it? What tips and tricks have you used successfully?

Believe it or not, I was introduced to the term “Hypoplastic Left Heart Syndrome” before we even knew my wife was pregnant. I’m 99% sure I was on the Christianity Today website and was reading an article about Matt Hammit, who is the lead singer of the band Sanctus Real:

The article talked about the band’s newest album at the time (Pieces of a Real Heart) but focued more on the story of Matt and his wife finding out that their unborn baby had a heart defect…HLHS. I didn’t go and research HLHS right there or anything like that, but I read through the article and remembered how it talked about this CHD being “rare” and how they were praying hard that everything would be ok with their son (who they named Bowen). My immediate thought after reading that article – I kid you not – was, “Oh wow, that’s pretty awful…I don’t know what I would do if I was in that situation.” I know, right? Crazy.

Well time went on and to be honest, I forgot about the article. I like Sanctus Real and listen to their music but otherwise I didn’t think about HLHS and definitely couldn’t remember how it was pronounced or spelled. Then we found out about Nolan. You know the story, if you’ve been reading this blog. I remember one day, specifically: I was at home for a little bit while Nolan was recovering from the Norwood Procedure in the hospital, and suddenly the story about Matt and his son popped into my head. I remember something about a CHD, but didn’t remember much else, so I looked him up. I saw, once again, that Bowen was born with HLHS and this time it meant so much more to me. I was amazed. I saw that he went through his two surgeries and was doing well:

And I learned that Matt made a solo album with songs that were inspired by his journey learning about Bowen’s heart condition and his birth:

I searched like a madman for this album and couldn’t find it anywhere. Months later I found it at a LifeWay Bookstore and bought the last copy. For all you heart parents out there, I really encourage you to give this album a listen, since it really captures a lot of the emotion a heart parent goes through. Sometimes it’s a tough listen because it reminds you of the tough times, and other moments it’s uplifting and hopeful. The first song on the album, “All of Me”, is my favorite because it really captures how I’ve felt and at times continue to feel about being a heart dad. Check it out here:

I am thankful for Matt for writing these amazing songs and pouring his heart into lyrics that will hopefully help heart parents out there, and even to help those who may not fully comprehend what we’re going through. I’m thankful for Matt’s commitment to his family, his community, God, his band, and continuing to make awesome music. He’s a great example of an HLHS Dad fighting for his son and all other heart kids. I love to see updates about Bowen online: he recently went on tour with the band and it looked like he had a really great time. I can’t imagine how difficult it must be to be a heart dad while touring around the country.

Matt and his wife Sarah have also started the Whole Hearts Foundation, which seeks to “Share God’s love by providing education, support, connections, and innovation for families of a child living with pediatric congenital heart disease – without boundaries of faith, culture, or economic standing.” Learn more at: http://wholehearts.org/Home.aspx

Again, this also goes to show that CHDs can touch any family: athletes, musicians, average joes…anyone. I know I’m always thankful for those who choose to put themselves in the public eye and share their CHD Story and advocate for others. Thanks Matt!

All heart kids are different, that’s for sure. One thing all heart parents will tell you, though, is that the journey of a heart parent is a difficult one. Gaining fresh perspective throughout your journey is a must if you want to avoid losing your mind. A couple posts ago I blogged about the Heart Parent Panel that I was on, and in this post I want to expand a little bit on one question that was asked to the panel and my answer to it.

I’m sure I’m going to completely butcher the way this question was asked, but here’s how I will try to remember it: “How do you deal with expectations you might have for your child?” The gist of this question, if I recall correctly, had more to do with schooling, sports, and the like. The moderator, though, decided to ask me if I had heard anything about this on interactions here on the blog. While I honestly haven’t, this is more or less how I answered:

Expectations will probably always be a struggle for us as heart parents, and while none of my children are school-age yet, it’s even harder having twins. It will always be difficult not to compare Nolan to Grant, and that doesn’t even have to do with the heart stuff right now, it more has to do with the developmental stuff. Grant is walking and feeding himself with finger foods, and that’s really awesome. Nolan, however, doesn’t crawl, doesn’t walk, struggles to sit up on his own, doesn’t eat by mouth. See where I’m going? It’s hard. But you have to almost look at the twins separately in order for you not to have lofty, unreasonable expectations for your child. If you look at Nolan in a vacuum, any small improvement he shows is cause for celebration. So while 5 minutes of assisted standing doesn’t seem like much compared to Grant, when looked at on its own, it’s awesome. So step back, stop and think, and look at your child in his or her own situation and it won’t be so bad. And the best part, you won’t beat yourself up over how they’re doing.

But still, it continues to be hard because our own crazy minds get in the way. Case in point: the feeding tube. Every now and then I get super-worried about the way future with Nolan. One time I was at a G.I. appointment with him and there was this boy there that was around 7 or 8 and he had a feeding tube. And I thought “Oh my God if Nolan has a feeding tube when he’s school-age, that’s going to be terrible.” Suddenly I get caught up in how he’s going to be treated by his peers. Whenever I bring this up people tell me “Oh kids are tough” and I reply, “No they’re not, kids are jerks…or at least, some of them are.” And I just worry for him…nevermind that it’s YEARS away lol. And then the cleft palate thing too…might affect his speech. And I start to fret, “Isn’t it enough he has a bad heart?!” And this is where you work yourself into a tizzy and you’re like “Eat, kid, eat eat eat right noooow!” And you want so badly for him to make this miraculous turnaround overnight. It doesn’t happen that way. It’s a marathon, not a sprint. So I have to say “Calm down, Chris. Time is on your side.” He is making strides, even though they’re so small, they’re strides nonetheless.

The best advice I can give, at this stage in our journey is this: ENJOY THE RIDE. How’s that for a change? Yes, you need to be on top of things, and yes there are days when it will be hard, and yes Nolan may or may not be able to run mad like other kids. It will be ok. Because it’s an adventure. Enjoy it. So maybe Nolan won’t be able to play baseball, basketball, or football…maybe he will. If he doesn’t that’s ok. Maybe he will grow up to be an amazing musician…or maybe he will grow up to have an incredible interest in Curling. Crazy right? I don’t know much about curling, but if he likes it, I can learn it with him. And that’s an ADVENTURE. Think about this: how many of you cared at all about CHDs before you knew about your child’s CHD diagnosis? I’d venture to say almost none of you. But NOW you’re deep in it and hopefully you’ve met some amazing heart parents, incredible heart kids, awesome hospital staff, etc. It’s part of your life and you’re thankful for it. So your life isn’t on a “typical” route anymore…so what?

Don’t get caught up in preconcieved notions about your heart child. Let them be who they are and enjoy it along with them. After all, you’ve fought so hard to keep them safe, healthy, alive…let them live. The way I see it, you have a choice to make as a heart parent: you can choose to get caught up in the struggle or you can get caught up in the adventure. I want to choose the adventure. I choose to learn, I choose to advocate, I choose to fight this fight with my family…and God willing, I’m going to be better for it in the long run. What do you choose?

I remember once meeting someone who – when I asked how they were doing – loudly answered, “Oh I am blessed and HIGHLY favored!” I thought that was interesting and it made me think. While I’m not questioning this lady’s heart nor will I go into any kind of theological debate, I will say that some people recognize the blessings in their lives while some say these things with an expectation of some DOPE stuff that God owes them. Honestly, if God wanted to give us all a huge bag of gold and a Bentley, the promise of Heaven wouldn’t hold much weight, would it? Anyhow, I digress…back to blessings. I think sometimes our society as a whole has the idea of “being blessed” altogether wrong. And I’m included in that number a lot of the time. We think blessings mean no bills, money in the bank, a 5-star meal, and a nice car. And yes, those things are blessings. But what I’ve learned lately is that if you woke up this morning, God’s blessed you. Simple as that. So go make the best of it.

Sometimes it’s really easy for us to get caught up in life that we forget to be thankful for those blessings that we have everyday. A home, food, family, friends, oxygen, health, all fit into those category. For me this is the best reminder of my blessings:

Look at that kid. How cute. The mere FACT that he is here with us is a major blessing. A major blessing. This morning I held Nolan on my lap and was making him laugh and it reminded me of those two months where he had a breathing tube in him…he couldn’t cry, he couldn’t laugh…he couldn’t make a sound. And there were moments where I was honestly scared that I would never see my son again. But here he is. BLESSING.

Yes, the bills sometimes seem astronomical and the bank account seems small, yes things break and annoy you at home, yes sometimes you feel so tired from your week that you beat yourself up over not spending enough time with your family…but that doesn’t mean the blessings are gone. You just need to open your eyes. Every time that kid smiles, every time that kid laughs, I’m reminded of just how much I am blessed. I realize not all heart parents are so fortunate. I can’t imagine how difficult that is. Sometimes it’s easy to be frustrated that Nolan doesn’t eat by mouth or that he doesn’t walk or crawl yet. But he’s here. When you look at it that way, things aren’t so bad. So I encourage you, take a step back and see your real blessings. You’ll be blown away. Sometimes those challenges in your life are put there to change your perspective on blessings. You don’t have to go claiming them in order for them to just magically appear…they just might already be there and you just aren’t looking.

This past Saturday I got a great opportunity to participate in the 4th Annual Camp Luck Parent Education Symposium. Camp Luck is a medically supervised camp for children with heart problems and their families. They do an incredible job in connecting heart families together and supporting them throughout this journey.

While Nolan won’t be old enough to attend Camp Luck for awhile, I still wanted to be a part of the family interaction. And the Symposium, which was held at Levine Children’s Hospital, was pretty awesome. I learned lots of cool stuff about Camp Luck and things they’re trying to do for the future – including BabyLUCK – which will do great things for kids Nolan’s age and younger. There was quite a bit of heart siblings there and they were AMAZING (I’ll blog about that another time) and lots of cool info sessions. I got to take a tour of the cath lab and learn about all they can do there…def interesting. Then the curveball came in…

So Nolan has been having a rough few weeks: it started with a double ear infection, then a stomach bug…and he hadn’t been quite back to normal since and my wife texted me that his o2 sats were lower than usual (low to mid-70s) and that he was VERY fussy. I had her call the on-call cardiologist, Dr Cook, who instructed her to bring Nolan into the ER just to give him a look-over. So once Bekah arrived with Nolan, I excused myself from the Symposium and walked over to the ER. Luckily I was right there. Dr. Cook did an awesome job of notifying the ER that we were coming, so everything went pretty smoothly. Long story short, Nolan got admitted and has ANOTHER ear infection and fever, which caused the low sats. They kept him due to the low sats. As of this writing, he’s on room air and getting antibiotics and should HOPEFULLY go home today. Now back to our regularly scheduled programming…

After Nolan got settled, I went back to the Symposium because I was asked to speak on the Heart Parent Panel, which was a big time honor for me. There are so many parents out there with WAY more experience and knowledge than me, so I treated it as an opportunity to learn and share my experience with Nolan.

That’s me, 2nd from the right

We had some really good discussion about our kids and some of the difficulties we may have surrounding our expectations for them. I loved being able to hear different perspectives and interact with the other parents both on the panel and in the audience.

When I agreed to serve on the panel, I was given a list of questions that may be asked during the discussion. We didn’t get to some of them due to time constraints, so I wanted to put them up on here with my answers and hopefully allow other parents to chime in on our comments section:

1. All heart parents worry, but where do you turn when the worry feels overwhelming?

I tell a lot of people that a good support system is key to avoiding losing your ever loving mind during this CHD journey. Seriously. Find a good support system. For me, that is my faith, my church friends (we meet weekly), this blog, other heart parents, my wife, and sometimes even our chaplains at work. A diverse support system is great because it helps you when you just need to approach your worry or concern from a different angle: sometimes I can say a prayer and feel fine; other times I need to write it down or just plain vent to someone. We’re not on an island: there are other people going through struggles and are willing to walk with you through them.

2. Are you the type of parent who handles your child’s CHD by trusting what the cardiologist tells you, or do you need to understand their CHD inside and out?

I’d say a little bit of both. The fact is these cardiologists don’t get their knowledge off craigslist: they work hard to learn their field and their trade. They know their stuff. And while I am no medical expert and certain things are just over my head, I think it’s foolish not to at least try to familiarize yourself with your child’s condition. The cardio team isn’t there with your child the whole time, you are…

3. How do you deal with the anxiety you feel before your child’s doctor appointments, etc.?

I think this changes with time and type of appointment. Early on in this blog I talked about how utterly TERRIFIED I was before Nolan went for the Norwood Procedure. Heck, it still freaks me out sometimes just thinking back on it. Surprisingly I wasn’t too worried for his first cath and I was a tiny bit worried before his Glenn Procedure. Either way, whether you completely melt down before each appointment or you’re stoic, this is where your support system comes in. Tell people what’s coming so they can talk with you, check up on you, and give you an opportunity to voice your anxieties. Usually I’m working when Nolan has 99% of his appointments, but in January I got to go to a cardiology appointment with him and while I was confident that everything was fine, there’s still that sliver of anxiety that always exists in the very recesses of my mind. It’s like “Ok ok ok ok ok don’t find anything new, please nothing new, pleasepleasepleaseplease!”

4. When your child has been hospitalized, are there any special items you bring to make the hospital seem more “home-like” and comfortable?

For Nolan we try to bring a few toys or stuffed animals. The hospital does a great job of providing toys if we ask for them, but I also like to give him familiar stuff as well. One thing I try NEVER to forget is his little sound machine: he has this giraffe that plays different types of white noise and that’s what he sleeps with every night.

5. How do you deal with well-meaning family and friends who want to help in some way?

Oh people…what are we gonna do with them, right? The average friend/family member, no matter how well-meaning, doesn’t quite understand the complexities of having a heart baby. They demand to be around for everything, they want to be over all the time, or be all up in your bidness. Parents, however, are the ultimate gatekeeper, and you need to put your foot down and set boundaries: not just for your child’s health but your own mental health. People will nag and whine and moan, but they’ll get over it. Sometimes you want to keep the germs away and you don’t want Aunt Pookie and her 14 boogery kids coming over and snotting up your house…so you can play nice and say, “Right now we’re keeping visitors to a minimum to avoid illness. I’ll let you know when is a good time.” OR you can give people options: if people offer a meal, let them bring it and (key) drop it off and leave. Or they can make phone calls or skype or whatever. You can set the boundaries. And people have to respect those boundaries. And if they don’t like it, too bad.

6. Your children are all different ages, but how did you answer their questions about their CHD, while not creating undue anxiety?

This one doesn’t directly apply to me, but I’d love to see readers’ input on this. How did you explain it to your kids when they are old enough? Our oldest son is 3 and we tell him Nolan has a “boo-boo heart” and he understands this simple concept, which we can expand on as he gets older. Dr. Herlong – one of the cardiologists at the symposium – made a great point that parents NEED to teach their kids about their CHD, so they know how to pronounce it, know what it is, and will eventually become grown up, independent patients.

7. Do you emotionally cope with your child’s CHD the same way your partner does? If not, does this create tension or add a different perspective?

The answer to this is the reason I write this blog: guys are just different. There are things associated with Nolan’s CHD that I feel like we can all push through together. Sometimes it just leaves me feeling deflated. I want him to walk, and eat by mouth, and not have to struggle with feeds or a cleft palate. I do. Somedays I’m super-duper confident dad because I want to tell him “You can do this, I know you can!” and some days it’s like “What NOW?!” you just wanna put your head through a wall. I will say that my wife and I make a great team. And that’s what it takes to win: teamwork.

So let’s hear your answers to some of these questions in the comments section, I’d love to read your opinions! I had a really fun time at the Symposium, even though I missed some of it. I learned a lot about the cath lab, helping kids through anxiety, and even the care provided to CHD kids once they grow into adulthood. I’m looking forward to the next Symposium and continuing to be involved with Camp Luck! To read more about Camp Luck, check out their website: http://www.campluck.com/

Oh yeah, and one more thing: I did run into a couple people there who have read this blog and you have no idea how exciting that is for me. It makes me feel like all this is worth it, so A BIG SHOUT OUT TO ALL MY READERS!